Adult siblings of people who have autism or an intellectual disability need help to bridge “serious gaps” in the support available, according to a new report.
There is not sufficient advance planning for what will happen to the disabled sibling into the future, which causes anxiety and guilt.
The report, entitled ‘Adult Siblings of Individuals with Intellectual Disability/Autistic Spectrum Disorder: Relationships, Roles & Support Needs’, was compiled for the National Disability Authority and will be published later today.
Written by Dr Máire Leane, Dr Anna Kingston, and Dr Claire Edwards, of the School of Applied Social Studies, at University College Cork, it shows that brothers and sisters have a vital role to play in the support and development of siblings who have autism or intellectual disabilities, but that they have had little or no support themselves.
According to the report: “Little is known about how adult siblings understand their relationship with their brother or sister, and what understandings they may have about the roles they expect to play in the life of their brother or sister in the future.”
While adult siblings maintain high levels of involvement and emotional connection with their brothers and sisters who have ID/ASD, this can clash with responsibilities they have to spouses, partners, children, or their work.
In total, 25 siblings, aged 18 to 45 and living in various parts of Ireland and abroad, participated in the study.
From an early age, siblings are socialised into ‘minding’ and ‘looking out for’ the brother or sister who has special needs and most said that this did not impact negatively on their lives. In a small number of families, mothers or fathers struggled to cope with the challenges of having a child with ID/ASD.
“As children, many participants experienced negative public attitudes towards their brother or sister with a disability,” it said.
“For some, this resulted in conflicted emotions about their brother or sister with ID/ASD. On the one hand, they felt embarrassed by their brothers or sisters and, on the other hand, they felt sorry for them, because of their disabilities.
Most interviewees were involved, or planned to be involved, in supporting their brother or sister and cared deeply for them, even if reconciling these responsibilities with other aspects of their lives caused guilt or resentment.
“Participants envisaged a range of future living situations for their siblings, including continued residential care, movement into residential care, supported independent living, and co-residence with themselves,” it said. “Most participants noted that there was no definite plan for the future of their brother or sister. In many cases, their parents were reluctant to engage in planning.
“Concern for the welfare of their brother or sister in the future, and lack of clarity about how, where, and by whom they would be supported was a source of anxiety for many participants.”
The report found “serious gaps in the supports available to siblings” and recommended that key supports be provided, including information about disability entitlements and service provision, support with family discussion of future planning and access to day, respite and residential services.
Dr Máire Leane said society needs to become more “sibling aware”.
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